is anybody else awake

[trimmso]

Hi does any other person only manage to sleep 3-4 hours at a time and wake up with terrible pain that always feels worse in the small hours

[Eian59]

Hi Trimmso

I have had that problem for about three years. As my condition gets worse.

It's a nightmare when you are the only one awake. And the pain is really hard to deal with.

I am in pain 24/7 and it really gets to me ruins my quality of life and brings me right down.

I can't take to many pain killer meds because of my lungs so it's always there.

I think it's hard to try and explain to people what it's like, you need someone who has the same condition to understand what you have to go through.

hope you get some relief soon take care.

Regards

Eian

[trimmso in reply to Eian59]

Hi Eian Thanks for reply I will be looking out for more contact in the wee hours so please respond when you feel well enough as I am awake most from 2am till about 5am Take Care you are not alone

[JakeFromLondon in reply to Eian59]

There must be something else they can offer you for the pain. How can you stay alive in this state?

[Eian59 in reply to JakeFromLondon]

Hi Jake

It is because I also have a lung disease I can't take to many pain killers as it suppresses

my breathing and would cause my lungs to collapse so stuck between a rock and a hard place. If I can get a lung transplant then it would be good but up till then I have

to deal with it .But you are right it's no quality of life at the moment so just hope they can find something to help.

Regards Eian

[JakeFromLondon in reply to Eian59]

Hi. I did know about that before I made my comments. There are ways to control pain that does not suppress your breathing. You’ve just got to get the right support to get what you deserve. This situation is not bearable for you. When you ask for help this time, you must mention that your life is at severe risk without adequate pain relief. You must let people know that you cannot take anymore. Nobody wants to see you come to severe harm and they will find a way to help you. You’ve just got to be proactive, get writing and get searching! This is your life.

[Eian59 in reply to JakeFromLondon]

Hi Jake

Thanks for the reply I do keep. Looking and the next time I see the consultant i

Will be telling him it's not good enough to be like this. I have been down about it and also contemplated ending it just stop fighting it and let it go.

But then I think of the pain my children would be in and I couldn't put them through that. So I will have to see if the docs can do something more.

Thanks again for your reply.

Eian

[CLARAmay]

Yes I do sometimes darling

[Krawlins]

Most certainly yes trimmso, if it’s really bad I end up popping another pill as usually only way edge taken off pain. I’ve several types to choose from (not funny) and I have a heat pad that lasts 90 minutes and it’s wonderful, I’ve got through half a dozen. Trouble is with most pills I end up feeling so groggy if I have work the next day. Feel for you x

[trimmso in reply to Krawlins]

Hi Kwawlins thanks for reply you sound like a real trooper such abrave and upward and onward sort but dont forget your own needs as we all need a littel care and compassion some of the time . My father always said quote "dont let the mob grind you down" so keep going for it Krawlins you got my vote.

[Krawlins]

You too trimmso, it’s hard all the time, occasionally I succumb and give into it when it gets too much, sometimes I have no choice, I simply can’t do what I used to. I think they call it pacing

[trimmso in reply to Krawlins]

plese tell me about thr heat pads can one buy in shop

[Krawlins]

Yes I've purchased mine from Argos (are you in UK?) Amazon and Lloyd's Pharmacy, they are roughly £20-£30 with 3 different heat settings, make sure it has a timer. I've been using them about 15 years now. They are roughly 30x45cms, worth a try and good luck

[trimmso in reply to Krawlins]

thanks Krawlins definitely going to try i am in uk

[Emma2017]

Yes I know what you mean. I am lucky if I sleep as much as 3 hours at a time. My lower back or my sciatica wakes me up. I have had 3 spinal ops and many spinal injections and have had ups and downs but right now am in a down patch. Want to reduce the drugs I am taking but it’s a catch 22 situation. Don’t want to wake my hubby but sometimes my pain is so severe that I just can’t stand it but mostly I just grin and bear it as he needs his sleep.

[trimmso in reply to Emma2017]

Hi Emma sounds like you have had enough to cope with for a long time and without much relief. Also it must be difficult to look to the one person who you most probaly love and care about above all others to help and ride with you on your scarry pain and suffering rollorcoaster.

Obviously I have no idea of either of your personalities but you must have had a strong bond to marry and therfore hopefully both of you regardless of what ironies you endure are in for the long haul.

Maybe you should ask your self how you would feel if your roles were reversed (God forbid) and he was waking you up and how you would react and feel.

In my late 20s (long time ago) I had the privaledge of excellent group pyschotherapy.

I always thought that I was so kind because I would give my last rolo away instead of eating thinking I was magnaminous and selfless.

However in one of the sessions I stated this fact to my fellow group members and was shocked when one chap called John retorted that it was a selfish act to give.

For a few minutes I was really confused and hurt by John' statement but after analysis his few words changed my thinking for ever.

The reason was that giving is a selfish act because the giver has the power over the receiver and can withdraw their giving at anytime to the needy receiver who is at the mercy of the giver' actions.

I still love to give but try to do it in as humble unconditional way I am capable of but since that therapy day many years ago I have always tried not to make myself feel good on the back of a captive audience.

I know I am waffling a bit but really I need to write more to really explain but I hope you get the jist.

One last thought is tommorrow is not promised to anyone so the only sure time is the here and now,

if you are alone like me or in a relationship this is the reality of life right now for better or for worse.

I once said to my youngest son after my work accident trashed my life as I knew it

quote: "Why me" and he simply replied " Why not"

[Emma2017]

Hi yes it does make sense but on the other hand too many people are happy to always take and never give. It’s a balancing act to admit you need help and happy receive the given while at the same time never to forget to also give which sometimes is difficult when all you seem to get is endless pain. Anyway it’s 1.15 pm and they say blue light definitely keeps you awake longer so shall now turn my iPad of. Maybe I will get some sleep who knows. Sweet dreams. Nice talking to you.

[trimmso in reply to Emma2017]

Hi Emma

Thanks for responding

I have had 4 hours good for me but waking up to the burden of the pain is hard and I know you understand as you are dealing with same.

I realise giving and taking are a massive complex human subject and was not trying to trivilaise it but just my input

plus one has to consider all the baggage anf demons one accummalates over the years that can ultimatly shape ones future perception of what life should be like.

I was damaged goods from a very young child and that damage infiltrated to every aspect of my life.

When I was a child if you became sick my mother would scold you at best and hit you at worst saying that you caused the illness to make trouble. There was nothing but grief so I had to keep stum when ill and leaving me with no sense of how I should react when I am ill and needy.

I had a physically charmed life up to 2007 when I had my work accident

I surmise that you are young and wonder how long you have had to bear your heavy personal pain burden.

Does/did your mother love you more through it or like mine consider your medical issues an inconvenience.

Sorry to pry but dont answer if it is too personal

Anyway what ever we bring to the table is all we have and what we are right now

All I know is that all the material stuff in the world is valueless conpared to one caring stranger who reaches out and helps you go forward to another day

[Emma2017]

Hi, my mum loved me and was there if and when I was sick which was not very often at all. Unlike you , by the sound of it anyway, I had a very nice childhood. Sorry to hear of your troubles when young. I am not that young now. Have grown up kids, youngest daughter still lives at home. All my troubles started some 2 and a half years ago, before that I did not appreciate what pain really was (childbirth is easy next to this).

[trimmso in reply to Emma2017]

Hi Emma I have 2 grownup boys would lov to have had a daughter but not meant to be.

Pain is so vital as a warning sign to alert us to possible medical issues however when chronic and insidious without relent is most destructive for me taking me below self preservation and losing control of fundemental daily living requirments.

I found childbirth pain unbearable I thought if it did not end I would die. I recently had acute Diverticulitus end of 2018 and that was excrutiating. Have not been able to turn a corner since.

Would you mind if I ask you to elaborate a little on the source of your pain and is there any hope in the future for relief from any quarter e.g op, etc

Do you have any other outlets to relate to other chronic pain sufferers

like pain group meetings ?

I live in rural Devon and services are patchy and inconsistent unless you are willing to travel the 15 miles to the main hospital.

I lived most of my adult life in London so doing rural is very difficult for me but my son and family moved and asked me to follow.

There is no immediacy here like London. Here everything is drawnout and becomes a total burden where as in London one can make choices.

Still I am here so have to cope.

[Emma2017]

I have constant and unbearable sciatica and on and off excruciating lower back pain. All my previous issues pale in comparison. Have had colitis which was bad but nothing in comparison. My first birth was excruciating but again a doddle next to this. Had huge disc herniations and got 3 ops to correct it. Then to top it off I had a cracked vertebrae which healed itself. I am now suffering from the sciatic nerve being encased by scar tissue which is horrible. Am getting a foramenal injection next week which hopefully will help, they take about half an hour with sedation. Fingers crossed.